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Leave a review! Kylie Dennis O'Sullivan was diagnosed with narcolepsy type 1 at 12 years old — after years of being told by doctors that she was "just fat and lazy." In this Black History Month UK special, Kylie joins hosts Kerly and Sakhara to talk about growing up mixed-heritage in East London, the cataplexy episodes her mum mistook for night terrors, and the long road to her eventual diagnosis at Great Ormond Street Hospital — the first in her local borough in 20 years. Now 38, Kylie is an M&E (mechanical and electrical) project manager in housing, a single mom to seven-month-old Myles, and a self-described "outside the box" thinker who's stopped apologizing for how her brain and body work. She talks candidly about PCOS, a possible ADHD overlap, workplace accommodations that actually work, pregnancy and a C-section shaped by her condition, and the role music plays in regulating her nervous system — plus the orexin science behind why none of this is "just about sleep." Meet the Guest Kylie Dennis O'Sullivan, 38, is based in East London and has lived with narcolepsy type 1 for 26 years, diagnosed at Great Ormond Street Hospital at age 12. She works as an M&E project manager in housing, is a single mom to her son Myles, and uses creativity and music as her outlet. Chapters 00:00Show Intro00:42Welcome & Introductions01:08Weekly Check-In02:47Meet Kylie & Diagnosis Basics03:49Early Symptoms & Misdiagnosis07:00Great Ormond Street Breakthrough09:08School Life After Diagnosis11:10Race, Family & Teen Challenges14:43Medication, PCOS & Adult Care17:59Weight, Metabolism & Gastric Bypass22:39Living With Narcolepsy Long-Term24:06Misconceptions, ADHD & Insomnia26:28Ditching Sleep Pills27:00Career Path Into Housing28:40Hybrid Work With Narcolepsy30:31Workplace Accommodations32:52Single Mom Survival Mode35:06Pregnancy & C-Section38:07Rethinking Rest & Naps42:35Creativity, Music & Orexin47:40Exercise, Swimming & Limits49:34Red Button & Closing Advice52:19Patreon & Merch Shout-Out53:25Outro & Community InfoResources Mentioned Great Ormond Street Hospital · Modafinil · Dexamfetamine · Professor Matthew Walker (neurologist) · Orexin agonists Links Website & support group: www.napsforlife.com Share your story: [email protected] Support the show: Patreon — www.patreon.com/NarcolepsyNavigators · Merch — merch.napsforlife.com/products Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

Leave a review! Liz is a speech and language therapist. Christine is a former chartered accountant. Both were diagnosed with narcolepsy type 1 — and both have had to fight, again and again, for accommodations they were legally entitled to. In this episode, Liz and Christine sit down for an honest career chat: the university meeting where Liz was told she'd never qualify as a therapist, Christine being denied a split exam sitting and then set up to fail four exams in four days, the "breadcrumb" accommodations that never quite add up to equal footing, and the burnout that comes from constantly having to prove a disability is real. They close with why they're both now choosing to build careers on their own terms instead of waiting for workplaces to catch up. Meet the Guests  Liz is a sociable, creative and empathetic person who loves meeting new people and diving into their stories.  Her passion for advocating for others with needs or differences, and the skills she’s developed as a therapist, mean that she has many strengths as a narcolepsy advocate. She also has a lot of experience advocating for herself in the workplace. After meeting Kerly at a narcolepsy conference and being one of the first guests on the podcast, she quickly realized she’d love to be a cohost and get more involved in the narcolepsy community. A year and a half later, Liz has interviewed many guests on the podcast and has really benefited from meeting a variety of people with narcolepsy- feeling supported and less alone. Liz is excited to see where the future takes her and to continue on her advocacy journey. Christine is a passionate narcolepsy advocate dedicated to raising awareness, supporting early diagnosis, and helping others feel less alone in their journey. After navigating her own path to understanding life with narcolepsy, she began sharing her experiences through her blog and creative projects, aiming to bridge the gap between medical facts and real-life experiences. With a warm, open style, Christine uses her platforms — including her vlog series and written resources — to demystify narcolepsy, highlight its impact on daily life, and inspire others to seek answers when something feels “off.” She believes that sharing honest stories can spark understanding, reduce stigma, and lead to faster, more accurate diagnoses. When she’s not advocating, Christine enjoys creating calming stationery, exploring nature, and finding beauty in the small, quiet moments of life. Chapters 00:00 Welcome to the Podcast 01:06 Career Impact Overview 01:21 Liz's Diagnosis and Starting University 02:31 University Discrimination Story 04:28 Fighting for Adjustments 07:02 Knowing Your Rights 09:13 Christine's Uni and Exam Barriers 11:52 Workplace Culture and Buzzwords 15:09 Christine's Career Pivot Research 17:51 Liz's First Job and Napping Setup 21:55 Exam Accommodations and Fairness 27:01 Later Jobs, Burnout, and Managers 30:13 Workplace Scrutiny and Anxiety 32:19 Managing Symptoms at Work 33:46 Motivation, Naps, and Mindset 35:34 Job Search and Self-Employment 38:41 Why Diagnosis Fails So Many 40:02 Quitting the London Job 45:22 Burnout to Flexibility 53:10 Trust and Adjustments 57:32 Resources and Sign-Off Resources Mentioned Calibre Disability Leadership Course (NHS) · Go Succeed · Invest NI · Catalyst (Northern Ireland business hubs) · The Equality Act Links Website & support group: www.napsforlife.com Share your story: [email protected] Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

Leave a review! Mel has narcolepsy without cataplexy.Jeanna has Tourette syndrome. They met in a Walmart parking lot, went viral for a motorcycle ride the internet still argues about, and somehow became each other's safest place — through a cancer relapse, childhood trauma, and a lot of dark humor. In this episode, hosts Kerly and Sakhara sit down with Mel ("Mel of the Mountains") and Jeanna (founder of Tourette Taxi) to talk about what happens when two very different neurological conditions meet inside one friendship. They cover the viral video that made strangers argue over whether Mel's narcolepsy was "real," the difference between narcolepsy type 1 and type 2, why Tourette's tics get worse under stress and staring, cataplexy safety concerns, and what it means to finally stop apologizing for symptoms you can't control. Meet the Guests Mel Stanger ("Mel of the Mountains") lives with narcolepsy without cataplexy, discovered after falling asleep while driving a motorcycle. Outside of advocacy, she tans animal hides and teaches others how to work hide into clothing. She is currently navigating a cancer relapse. Jeanna DiVitro is the founder of Tourette Taxi (Tics, Trips, Truths), a social media platform where she uses humor to raise awareness for Tourette syndrome and its common comorbidities, including ADHD, anxiety, depression, OCD, and bipolar II. Chapters 00:00 Meet the Hosts and Guests 00:55 Mel and Jeanna Introduce Themselves 03:14 How They Met Online 06:17 First Impressions and the Viral Ride 09:05 Humor as Healing and Awareness 11:58 Living With Narcolepsy and Tourette's Day to Day 14:29 Misconceptions and Public Anxiety 24:09 Cataplexy Safety and Medical ID 30:56 Triggers, Waves, and Changing Symptoms 38:39 Narcolepsy Types and Diagnosis Basics 40:05 Tourette Diagnosis Challenges 42:12 Comorbidities Reality Check 44:09 Cancer Relapse Support 52:36 Disability and Boundaries 57:41 Tourette Taxi Origin Story 1:02:51 What Healthcare Pros, Employers & Families Should Learn 1:09:10 Takeaways and Dark Humor 1:15:07 Closing: Happy Napping Links Website & support group: www.napsforlife.com Share your story: [email protected] Follow Jeanna: Tourette Taxi (Tics, Trips, Truths) Follow Mel: Mel of the Mountains Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

Leave a review! At just 16, Chloe has already lived through what most people spend decades trying to understand about themselves. Diagnosed with narcolepsy type 1 in seventh grade after a mysterious two-to-three month stretch of sleeping nearly 20 hours a day, Chloe went from straight-A student to fighting for her own accommodations — and came out the other side with a clear plan to become a sleep doctor. In this episode, Narcolepsy Navigators co-hosts Kerly and Matilda (making her hosting debut!) sit down with Chloe to talk diagnosis, identity, dating with a chronic illness, self-advocacy, and why she wouldn't press the Red Button even if she could. 00:00 Welcome to Season 5 of Narcolepsy Navigators 00:46 Meet Chloe, and Matilda's co-hosting debut 06:33 Chloe's diagnosis story: 20 hours of sleep a day 08:16 The relief — and identity shift — of finally getting answers 11:14 Giving up competitive dance 14:32 Family, half-siblings, and explaining narcolepsy to divorced parents 17:11 Best friends who really understand 22:43 Dating and relationships with narcolepsy 26:19 Grief, acceptance, and learning to advocate for herself 33:34 A packed AP course load and the planner that keeps her sane 37:00 Career goals: becoming a sleep doctor 39:21 The Red Button Question About The Guest:  Chloe Chea is a student and advocate born and raised in Texas with a Chinese Cambodian background. Diagnosed with Narcolepsy Type 1 in 2021 at the age of 12, she is passionate about raising awareness for sleep disorders and empowering others navigating similar challenges. Her firsthand experience managing narcolepsy in academic and social settings fuels her commitment to advocacy, peer support, and bridging the gap between lived experience and understanding among younger populations. Chloe is actively involved in her school community and seizes opportunities to speak about narcolepsy and raise awareness whenever possible. In searching for outlets to deepen her impact while in high school, she discovered NapsForLife and Narcolepsy Navigators, whose work inspired her to become more involved in the sleep disorder community and eventually join the team to help carry its mission forward.. Though still early in her journey, Chloe is determined to make a lasting difference. She works at her family’s donut shop in her spare time, and plans to pursue a career in healthcare in hopes of helping to build a future where chronic illnesses like narcolepsy are better understood, accommodated, and treated with compassion, while fostering an empathetic and safe environment for all. Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

Leave a review! What is the exact dollar value of staying awake? In this special episode, we dig into a real independent evidence report on Orzeyful (oporexin), a newly FDA-approved drug for narcolepsy type 1 that works completely differently from anything currently on the market — it doesn't just manage symptoms, it replaces the missing brain chemical behind the disease itself. We break down what the science actually means, why a "C++" grade from independent researchers is secretly a huge win, why the $50,000-a-year price tag might actually be the fair one, and the insurance practice called step therapy that could still stand between patients and the drug they need. About The Episode  This is a special deep-dive episode: instead of a guest conversation, we're unpacking a real independent evidence report — from the Institute for Clinical and Economic Review (ICER), based on an August 2026 Sleep Review article — on Orzeyful, a newly approved narcolepsy type 1 treatment, and what its pricing debate means for patient access. Resources:   Institute Publishes Evidence Report on New Narcolepsy Treatment (Sleep Review)   ICER Final Evidence Report: Overporexton for Narcolepsy Type 1Evidence Rating Details: B+ and C++ Explained (ICER) Policy Recommendations on Pricing and Access (ICER)FDA Approves First Drug to Treat the Full Range of Narcolepsy Type 1 Symptoms (FDA)FDA Approves Takeda's Orexin Agonist for NT1: Orzeyful (Sleep Review)Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

Leave a review! It took Michelle Chadwick 20 years to get diagnosed with idiopathic hypersomnia (IH)  and when she finally did, she found almost nothing online to help her make sense of it. So she built it herself. In this Advocacy Series episode, hosts Kerly and Christine talk with Michelle Chadwick, founder of Hypersomnias Australia and creator of the world's first Global Idiopathic Hypersomnia Awareness Week, about the two-decade road to diagnosis, the funding gap no government will close, the medical record that still says the wrong diagnosis, and the honest truth about what advocacy actually costs. About The Guest:  Michelle Chadwick is a global advocate for people living with sleep disorders, with both a personal and professional interest in the space. She lives with idiopathic hypersomnia (IH), and in 2013 founded Hypersomnias Australia — the world's first nonprofit dedicated to IH — alongside the Global Idiopathic Hypersomnia Awareness Week and Australia's IH Patient Registry. She chairs Sleep Disorders Australia, sits on the Australian Sleep Association's Disorders of Central Hypersomnolence Working Group and the Global Sleep Consortium Expert Working Group, and has spoken at government hearings worldwide to advocate for better research, diagnosis, and care. 00:00 Welcome to the Advocacy Series 01:08 Meet Michelle Chadwick from Brisbane, Australia 03:47 Michelle's bio: founder of Hypersomnias Australia 07:34 What is IH, and Michelle's first symptoms at age 11 10:44 The 20-year road to diagnosis 12:05 Getting diagnosed, but getting no support 15:01 Building lifestyle strategies from scratch 18:57 The meeting that led to founding Hypersomnias Australia 20:26 Obstacles, stigma, and "I might not do it again" 23:29 IH vs. narcolepsy, explained simply 27:17 The government funding gap no one talks about 30:59 Workplace disclosure: why so many can't work in their trained field 37:37 Getting researchers to finally take IH seriously 40:30 Michelle's honest advice for newly diagnosed advocates 44:20 Morning routine hacks for sleep inertia 47:30 The Red Button Question If this episode resonated with you, share it with someone who needs to hear it — especially anyone newly diagnosed and searching for the support that didn't exist for Michelle either. Subscribe, leave a review, and join our community. Happy napping, everyone. Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

Leave a review! What happens when you crack open the backend analytics of a podcast built for one of the rarest, most invisible patient communities on earth? In this special episode, we dig into the data behind Narcolepsy Navigators — the downloads, the device stats, the surprising cities driving our global audience, and the uncomfortable tension between chasing scale and staying true to the exhausted, isolated listener we built this show for in the first place. Turns out the algorithm doesn't understand our audience at all. Photophobia and brain fog make video a barrier instead of a bonus. Exhaustion means listeners hit play in a browser tab instead of switching apps. And a single doctor in Philadelphia or advocate in Lisbon can do more for our reach than any trending hashtag ever could. This is the story behind the numbers — and why we're choosing to stay a lighthouse instead of a billboard. About This Episode:  This is a special data-deep-dive episode: instead of a guest conversation, we're breaking down our own podcast analytics ,download geography, device behavior, YouTube performance, and Spotify growth from December 2023 through March 2026  to understand what the numbers actually reveal about how our community finds us and why they stay. If you're one of the listeners in this data  whether you found us through a link in a forum, a doctor's printout, or a friend in a support group  thank you for being part of the reason this show exists. Subscribe, leave a review, and share this episode with someone who needs to know they're not alone. Happy napping, everyone. Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

Leave a review! What happens when your teenage son stops closing doors, watches the same movie three times in one day without remembering, and disappears from his own life for weeks at a time? In this episode of Narcolepsy Navigators, hosts Kerly and Ross sit down with Jonathan Lyons — a father from Florida who's spent the last eight years advocating for his son, diagnosed with Kleine-Levin Syndrome (KLS) at just 14 years old. Jonathan shares the chaotic path to diagnosis, the ER visit that changed everything, the communities that showed up (and the ones that didn't), and what it really means to parent a child who's been robbed of years of his own life. This is a rare, honest look at chronic illness from the caregiver's side of the story. 00:00 Welcome to Season 5 of Narcolepsy Navigators 01:16 Meet Jonathan: father and caregiver to a son with KLS 03:30 "Maybe he shouldn't drive" — the doctor's first advice 06:28 Early signs mistaken for puberty 07:37 Behavioral changes: aggression, hyperphagia, and memory loss 13:54 Realizing this might be medical, not behavioral 18:32 The breaking point: carrying his son to the ER 23:21 Finding the "guardian angel" doctor and the grandmother brigade 31:03 The fog vs. the sleep: which is worse? 38:17 How the synagogue and scouting communities responded differently 45:49 Adult body, teenage mind: the emotional gaps KLS leaves behind 57:11 The grief no one talks about 1:02:51 KLS trajectory research and the changing "texture" of episodes 1:06:49 Advocacy: bringing an attorney to a school meeting 1:09:21 The Red Button Question Guest Bio  Jonathan Lyons is a father and caregiver based in Florida whose son was diagnosed with Kleine-Levin Syndrome in 2017 at the age of 14. Over the past eight years, Jonathan has become a fierce advocate for his son — navigating diagnosis, school accommodations, and a healthcare system with almost no answers for a disease this rare. He also keeps a blog documenting the family's journey at klsproject.org. Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

Leave a review! Imagine falling asleep for two months straight — losing your memory, your personality, even your sense of time. That's life with Kleine-Levin Syndrome (KLS), one of the rarest sleep disorders in the world. In this episode of Narcolepsy Navigators, hosts Kerly and Sakhara sit down with Saphronia Young, a former elementary school teacher from Texas living with both KLS and Narcolepsy with Cataplexy. Saphronia opens up about her decade-long fight for a diagnosis, the school district that sent her to an alcohol treatment center instead of supporting her, the family nickname "Lola" for the person she becomes during an episode, and her honest, unfiltered answer to the Red Button Question: would she push the button to erase her diagnosis if she could? This is a conversation about resilience, faith, and what it costs to be misunderstood by the people who are supposed to help you. About The Guest Saphronia Young is a former elementary school teacher from Texas living with Kleine-Levin Syndrome (KLS) and Narcolepsy with Cataplexy. Diagnosed with KLS in 2016 after years of misdiagnosis, and with narcolepsy just three years ago, Saphronia now works as a virtual tutor from home, where she can manage her episodes on her own terms. She's a mom, a fighter, and an advocate for greater awareness of rare sleep disorders. Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

Leave a review! What does it look like to build an extraordinary life with narcolepsy — without medication? Welcome to the Narcolepsy Navigators Advocacy Series, where lived experience meets powerful storytelling. This week, Kerly and Liz sit down with David Kuhn: a 27-year narcolepsy survivor, elite master fitness trainer, licensed massage therapist, and founder of the Facebook community Narcolepsy Naturally. David's journey is one of the most remarkable we've heard. Diagnosed in 1998 at around age 28, he went from being unable to work, experiencing up to 40 cataplexy episodes a day, and reaching a personal rock bottom — to becoming a therapist for the Ohio State University football team, working with over 62 NFL players, Olympic gold medalists, and hundreds of elite athletes. And he has done all of this since 2010 entirely without narcolepsy medication. In this honest, emotional, and deeply inspiring conversation, David shares what it actually took — the discipline, the baby steps, the mental frameworks, the dietary changes, the fitness routine, and the hard decision to remove toxic stress from his life — to get to where he is today. He is not here to tell anyone what to do. He is here to show what is possible. ━━━━━━━━━━━━━━━━━━━━━━━━━━━━━ WHAT YOU'LL HEAR IN THIS EPISODE ━━━━━━━━━━━━━━━━━━━━━━━━━━━━━ • The early symptoms David dismissed as tiredness from overwork • Falling asleep at the wheel — and the near-miss that finally sent him to a doctor • A devastating diagnosis with no hope offered by his first doctor • Medication overload, a mental health crisis, and the decision to walk out of a psych ward • Rock bottom, and the moment that changed everything • How he went back to school at 38 to become a massage therapist — medication-free • His daily routine: sleep tracking, gym before 7:30am, whole foods, strategic napping • Why he started the Narcolepsy Naturally Facebook group in 2015 • The mental strategies that keep him going: audiobooks, self-help, positive input • Book recommendations: Seven Habits of Highly Effective People, Let Them Theory (Mel Robbins), Think and Grow Rich (Napoleon Hill) • How he uses narcolepsy as a "shock factor" to inspire the athletes he works with • His powerful message: narcolepsy is your soccer field, not your prison • The Red Button Question — and his answer will not surprise you ⚠️ NOTE: This episode contains discussion of suicidal ideation and mental health crisis within David's personal story. Please take care of yourself first. ━━━━━━━━━━━━━━━━━━━━━━━━━━━━━ CONNECT WITH DAVID ━━━━━━━━━━━━━━━━━━━━━━━━━━━━━ 🌐 dkmotivations.com 📧 [email protected] 👥 Facebook: Narcolepsy Naturally (3,500+ members) ━━━━━━━━━━━━━━━━━━━━━━━━━━━━━ BOOKS RECOMMENDED IN THIS EPISODE ━━━━━━━━━━━━━━━━━━━━━━━━━━━━━ 📚 The 7 Habits of Highly Effective People — Stephen Covey 📚 The Let Them Theory — Mel Robbins 📚 Think and Grow Rich — Napoleon Hill 📚 The Power of Now — Eckhart Tolle (recommended by Liz) ━━━━━━━━━━━━━━━━━━━━━━━━━━━━━ SUPPORT NARCOLEPSY NAVIGATORS ━━━━━━━━━━━━━━━━━━━━━━━━━━━━━ 💜 Join our Patreon for bonus content & Discord community access 🛍️ Shop our merch at napsforlife.com 🌐 www.napsforlife.com 📩 [email protected] Have a sleep disorder story to share? We'd love to hear from you. Happy napping, everyone. ━━━━━━━━━━━━━━━━━━━━━━━━━━━━━ Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

Leave a review! Narcolepsy Navigators launches its Medical Series focused on the medical side of narcolepsy and common comorbidities. Host Fred (currently undiagnosed sleep disorder) and co-host Bernadette (narcolepsy type 1) interview Dr. Caitlin Chasser, a family doctor turned sleep and menopause specialist, who describes her own insomnia linked to premature menopause and the lack of sleep education in medical training. The discussion covers how menopause and perimenopause commonly disrupt sleep (estimated 60–80% experience sleep disturbance), and how sleep affects appetite, hormones, weight, repair, memory, mood, and daily functioning. Dr. Caitlin explains the role of stress and the sympathetic nervous system in blocking sleep, and emphasizes holistic and behavioral approaches including wind-down routines, meditation alternatives (coloring, knitting), breathwork, and body-scan techniques. She outlines practical sleep strategies for menopause-related insomnia: optimizing the sleep environment (darkness, quiet/white noise), regular exercise (with resistance training noted as beneficial with age), reducing alcohol, limiting naps (with a note that narcolepsy may require naps), and going to bed only when truly sleepy to build sleep pressure. Melatonin use is discussed as not a simple solution; it may help for jet lag, shift work, some children with ADHD/autism, and older adults, but should follow sleep basics and professional guidance, with caution about unregulated supplement dosing. Physical sleep disruptors are addressed, including hot flushes/night sweats, restless leg syndrome (often linked to iron deficiency from heavy periods), and obstructive sleep apnea (more common and underdiagnosed after menopause); she advises formal evaluation and targeted treatments, including iron supplementation when low. The episode also addresses libido changes during menopause, vaginal dryness and pain, topical estrogen or lubricants, the impact of poor sleep on desire and mood, and options such as HRT or testosterone therapy when appropriate, alongside emotional connection. Dr. Caitlin highlights cognitive behavioral therapy for insomnia (CBTI) as the gold-standard treatment, describes hyperarousal and normal sleep cycles, and notes significant improvements can be achieved. She introduces The Sleep Project, a group of clinicians formed after COVID to address rising sleep problems, offering online resources, consultations, and CBTI programs at www.thesleepproject.life. The episode closes with Narcolepsy Navigators announcements about Patreon, merch, Discord access, a shout-out to first patron Jane Powell, and information about Naps for Life CIC, ways to donate, and how to share stories via [email protected]. About The Guest Dr Caitlin Chasser is a GP and Sleep Consultant with a special interest in women’s health, particularly how sleep is affected by menopause. She is a co-founder of The Sleep Project, a doctor-led organisation helping people of all ages improve their sleep through practical, science-backed programmes. Caitlin has over 20 years of experience supporting women to feel better, sleep better and take back control of their health. She specialises in Cognitive Behavioural Therapy for Insomnia (CBT-I), the most effective treatment for long-term sleep difficulties, and takes a holistic, compassionate approach to sleep and wellbeing. Caitlin is passionate about making good sleep accessible to all — especially during life stages like menopause when sleep can often suffer.  Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

Leave a review! ⚠️ Content note: This episode includes discussion of childhood sexual abuse, suicidal ideation, and mental health crisis. Please take care of yourself first. 🎙️ EPISODE GUEST: Alejandro Bruner Solas — Program Manager, PWN for PWN | Narcolepsy Type 1 Warrior | Psychedelic Health Advocate | Colorado In one of our most powerful episodes to date, Kerly and Liz sit down with Alejandro Bruner Solas — a half Puerto Rican, Colorado-based program manager, Freemason, martial artist, and passionate narcolepsy advocate — who lived with undiagnosed narcolepsy type 1 from the age of five until he was 38. Alejandro's story is raw, honest, and deeply human. He walks us through childhood sleep paralysis he couldn't name, a silent burden shaped by trauma and abuse that taught him to keep quiet, misdiagnosis as a learning disability throughout school, a high-pressure corporate career that pushed him to breaking point, a mental health crisis that led to a life-changing ER visit, and an unconventional treatment path including microdosing LSD that he says gave him his life back. This episode also carries an important message for men in the narcolepsy community: your story matters, your voice is needed, and macho culture is not serving anyone. WHAT YOU'LL HEAR IN THIS EPISODE ━━━━━━━━━━━━━━━━━━━━━━━━━━━━━ • How sleep paralysis started at age 5 and went unnamed for over 30 years • The role childhood trauma played in Alejandro's silence around his symptoms • Being placed in special education despite no learning disability • The toxic workplace that drove him to sleep deprivation and crisis • The medication journey: Adderall, Modafinil, Xyrem, and Xywav • DMT, neuroplasticity, and the new frontier of psychedelic medicine • The power of mentors, small wins, and setting core values as anchors • His message to men in the narcolepsy and sleep disorder community CONNECT WITH ALEJANDRO & PWN FOR PWN 📧 [email protected] 🌐 pwnforpwn.org 💬 Join the PWN for PWN digital community via the website RESOURCES MENTIONED If Alejandro's story resonated with you and you're navigating your own chronic illness journey, CareTrack was built for moments exactly like this — when you need to track what's happening in your body, document your path to diagnosis, and advocate for yourself in a system that doesn't always listen. Built by a spoonie, for spoonies.Free to use at steadycaretrack.com If you or someone you know has a sleep disorder and would like to share your story, please reach out — we'd love to have you on the show. Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

Leave a review! Episode Summary: What happens when a brand strategist — someone who's built campaigns for Aerosmith, Lenny Kravitz, Samsung, and Levi's — suddenly finds himself standing in front of a wall of machines keeping his newborn daughter alive? For Steve Lewis, it became the beginning of the most important work of his life. In this episode of the Narcolepsy Navigators Advocacy Series, hosts Kerly and Iris sit down with Steve Lewis, founder of Nabu AI and director of Emotions.org, to talk about how a single sentence from his daughter Bowie — "Dad, I want to go to my own appointments" — sparked a mission to put patients back in control of their own health story. What We Cover: How Steve's career in entertainment and brand strategy came to a screeching halt when his daughter Bowie was born with complex, lifelong health challengesThe painful reality of transitioning from pediatric to adult care — and why retelling your medical story over and over is a form of traumaWhat Nabu AI actually is (hint: it's not a tracker — it's an advocate) and how it works as a single source of truth for your entire health journeyThe "Three Columns" framework Steve uses to understand human, social, and cultural needs in healthcareWhy Steve believes the patient is the biggest unsolved problem in health — and how to fix it with the right information at the right timeThe safety, encryption, and compliance features built into Nabu AI, including background checks for support workersWhat the UAE's "Al Nor Center" gets right that most of us don't — referring to disabled people as "determined people"Why invisible and rare conditions are superpowers — and how society loses when it excludes difference from the conversationWhat gives Steve hope: the passionate frontline workers he keeps meeting all over the worldAbout Steve Lewis: Steve Lewis is a seasoned brand strategist and product designer with 30+ years across music, film, fashion, and food. In 2007, the birth of his daughter Bowie changed everything. Now the founder of Nabu AI and Director of Emotions.org, Steve is on a mission to ensure patients are better informed, better supported, and achieve better outcomes. Find out more at [nabu.ai] (coming soon to iOS & Android). Resources & Links Mentioned: 🌐 Narcolepsy Navigators Hub: www.napsforlife.com💌 Share your story: [email protected]❤️ Support the podcast: www.napsforlife.com💬 Join the community: Narcolepsy Navigators Discord & PatreonQuote of the Episode: "Your true calling is where your great gladness and the world's deepest needs meet." — Frederick Buchner, shared by Steve Lewis Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

Leave a review! In this powerful episode of Narcolepsy Navigators Season 4, we sit down with Amelia, a 28-year-old from London who discovered she had narcolepsy while playing cards on a skiing holiday. What started as uncontrollable laughter turned into a life-changing realization when her hands and neck kept dropping—classic cataplexy symptoms. Amelia shares her raw and honest journey from being dismissed by doctors who told her "you exercise and eat meat, so nothing will show up" to finally receiving her diagnosis on New Year's Eve 2020. Her story takes us through the struggles of sixth form, the relief of university's flexible schedule, and the grueling challenge of completing a PhD while battling extreme fatigue. What You'll Learn: How narcolepsy symptoms can be dismissed as "normal tiredness" for years The relief and validation that comes with a diagnosis Why spoon theory and battery theory help loved ones understand your limits The hidden symptoms beyond the "big four"—brain fog, concentration issues, and memory problems How work environments can make or break narcolepsy management The complicated relationship between family skepticism and chronic illness Why self-compassion is a work in progress, even after diagnosis Standout Moments: Amelia's creative napping solutions—from under-desk nests to prison classroom floors The unexpected benefit of working in high-energy environments How moving from PhD research to prison rehabilitation work improved her symptoms The bittersweet reality of avoiding conversations about narcolepsy with family members Why she'd press the red button (and why that answer deserves grace) Amelia's candid discussion about the mental health impact, the ongoing medication trials, and learning to advocate for herself in work environments makes this episode essential listening for anyone navigating life with narcolepsy or supporting someone who is. Episode Highlights: 00:00 - Welcome and Introductions  00:55 - Amelia's Weekend and Choir  06:11 - Early Symptoms and Medical Dismissal  09:25 - Coping Through School and University  12:46 - Would Early Diagnosis Have Changed Choices?  13:55 - Relief and Accommodations After Diagnosis  17:05 - Naps and Medication Journey  19:42 - Managing Symptoms Without Strong Medication  22:04 - Self-Compassion: A Work in Progress  23:32 - Friends, Family, and Hidden Pressure  25:15 - Speaking Up and Setting Boundaries  27:44 - Advocating at Work  29:32 - Dating and Cataplexy 31:02 - Family Skepticism and Hurt  33:08 - Coping with Unsupportive Family  36:38 - Beyond the Main Symptoms  39:22 - Mental Health and Low Mood  41:29 - Finding Joy and Balance  43:58 - The Red Button Question  45:23 - What Narcolepsy Has Taught Me Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

Leave a review! Meet Vincent Arthur - a 21-year-old race car driver from Charlotte, North Carolina, who's proving that narcolepsy type 2 doesn't have to slow you down. In this inspiring episode of Narcolepsy Navigators, Vincent shares his powerful journey from struggling with undiagnosed brain fog and excessive daytime sleepiness in 2019 to becoming the first race car driver sponsored by Wake Up Narcolepsy in 2023. Discover how Vincent turned his diagnosis into a platform for advocacy, why he feels MORE comfortable behind the wheel than most people, and how he's using motorsports to shatter stereotypes about sleep disorders. From sim racing victories to real-world tracks, Vincent's story will challenge everything you think you know about living with narcolepsy. Key Topics Discussed: Vincent's 4-year journey to diagnosis and the relief of finally understanding his symptomsManaging brain fog, excessive daytime sleepiness, and ADHD-like symptoms during collegeWhy driving actually helps some people with narcolepsy stay alert (and the science behind it)Partnering with Wake Up Narcolepsy as the first sponsored race car driverBreaking barriers and proving that narcolepsy isn't a limiting factorPractical advice for anyone who thinks their condition will hold them backGuest Bio: Vincent Arthur is a 21-year-old professional race car driver and narcolepsy advocate based in Charlotte, North Carolina. Diagnosed with narcolepsy type 2 in early 2023, Vincent quickly became a voice for the sleep disorder community by partnering with Wake Up Narcolepsy as their first-ever sponsored race car driver. When he's not on the track, Vincent studies mechanical engineering and competes in sim racing, where he's achieved multiple victories. Follow his journey at @VincentA55 on all social platforms. Episode Highlights: [00:03:42] - Vincent's diagnosis journey from 2019 to 2023[00:13:00] - Navigating college with undiagnosed narcolepsy[00:23:00] - Why driving helps Vincent stay alert (the alertness factor)[00:25:32] - Partnership with Wake Up Narcolepsy and raising awareness[00:28:41] - Vincent's powerful message: "Narcolepsy is not a limiting factor"Connect with Vincent: Instagram/Twitter: @VincentA55 Resources Mentioned: Wake Up NarcolepsyCharlotte Motor Speedway areaSupport the Show: Support Narcolepsy Navigators on Patreon for bonus content, Discord access, and exclusive merch! Visit www.napsforlife.com Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***